Tag Archives: hypotonia

Climbing Indoors, Candy corn, and Claire

When I say climbing, I don’t mean the kind you do with a dynamic kernmantle rope (ahem, Brian has a lot of gear in the garage).   I mean the kind you do on a regular basis up the stairs and in the case of my children, on their new indoor playground.  Case  and Claire are blessed with enormously generous grandparents who shower them with toys and clothes constantly (to say they really do not want for anything would be a gross understatement)[we are so lucky -believe me I know!].  One set of grandparents the kids happen to live with and so the outpouring of love (or some might even venture to say ‘spoiling’) is done on a daily basis.  The latest toy/awesome gross motor tool that now graces my in-law’s back porch (turned playroom/workout room) is a giant, outdoor jungle gym.  They found it on craigslist and actually happened to know the sellers from the YMCA (obviously) and bought it.  The thing needed a major cleaning so Lee and I spent half a day taking it apart and giving it a thorough scrubbing  (I mean, like lots of elbow grease and spiders).  We then spent another half a day figuring out how to put the damn thing back together (exaggerating (a little)).   Side note: I wish we had video of the two of us using a rubber mallet trying to slam this massive playset together – cue expletives.


We finally did get it together again and the kids are all over it. And, although it’s frowned upon at school (for safety reasons), we encourage Case and Claire to go up the slide.  Like walking up a steep hill, it strengthens the muscles in your quadriceps (which are very weak on Case) and because the incline on this slide is really steep, he needs to pull with his arms to get all the way up.  It has a tunnel which we have to bribe Case to go through as his weak hip flexors make it difficult for him to pull his legs up into it and then putting all the weight on his arms to get out is equally challenging.

Perhaps you’ve already guessed what we’re using as a bribery tool… I can’t help but buy a bag when its staring right at me at the checkout line in Target and the kids can’t help but want it (Brian too).   Terrible thing, this holiday we call Halloween!  But using  small pieces of candy is incredibly motivating for Case and so I vow to myself to brush his teeth a little longer each night if he makes it through the tunnel two more times or up the stairs without as much fuss. Side note: We also use candy corn as a reward for going on the potty (I refer to it as peepee candy – appealing, eh?).  We put it in the zipper closure ziplocs and make Case open and pull “one” out or we also have an old bouillon cube container with a screw on lid that we make Case hold and unscrew (this is still pretty challenging).

You may notice in the photos that Case has things around his ankles. Although it could be some sort of odd fashion statement (not sure what the statement would be), they’re actually just 1lb weights which we’ve been putting on him when he’s around the house to help strengthen his legs while he does every day activities.  He’s getting around much better in them and I’m thinking of upping the weight to 1.5/2 lbs. Case minds them a little but doesn’t have the fine motor aptitude yet to undo the rather strong velcro  and pull them off his heels so he’ll endure it until he masters that skill (and I’ll be proud when he does!).

Finally, I had to share a few recent photos of Claire in honor of her first birthday.

The photo where she’s holding the landline phone perfectly captures the ever-present ‘tude that this girl has ALREADY.  We are in for it, I’m afraid!  The other photos are of her newest trick which is to play peekaboo with her hands over her eyes.  She showed off all her new tricks at the doctor’s office (labeling body parts to the head, shoulders knees and toes song and repeating almost all the words Case knows!) on Wednesday for her well-baby to which her smitten doctor echoed me in saying, “Uh oh, Brian is in for it with this one!”.  She is certainly a spitfire, but every time I begin to think how can I parent two totally different children I remind myself that she is the perfect prescription for Case.  He’s got a little sister who won’t take no for answer and who is going to stick up for her brother tooth and nail.  Not to mention that Case now goes up the slide willingly because Claire does it first.  In our house, a little competition is definitely a good thing!

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These ‘boots’ are made for walkin’…

Case's new SMO Orthotics

Much to Brian’s likely chagrin, I find myself singing this song to Case almost every time we put on his new Supra Malleolar Orthotic (SMO) foot braces, that I refer to as his boots (I figured that was much easier (for when he does start to talk) than getting him to say, supra malleolar othotics).

He started wearing them about a month ago (when he was 13 months) and at first there was a bit of a learning curve regression.  He was so used to pulling to stand the wrong way (i.e. using the top of his feet or the inside of his ankles to push off the ground – yeah, it looked terribly painful) that it took him some time (about two weeks) and lots of practicing and frustration to slowly start to get his foot underneath himself and push up.  The main goal of the SMOs is to stop detrimental pronation associated with hypotonia.  Without the braces, Case severely pronates and practically stands on the insides of his feet/ankles.  The braces offer necessary support to keep him from doing long-term damage to the tendons.

Prior to getting the SMOs, we had many long discussions with our PT, Ginger,  as to whether or not to brace (in the pediatric physical therapy community there are two camps – braces v. no braces) due to the fact that some kids rely too much on the bracing and never develop the muscles to walk on their own without them, but after taking a course through the SureStep Orthotics company, Ginger decided that these low-profile braces were for us.

As you can tell in the photo above, the braces are small and quite frankly  pretty easy to get on and off.  In fact, Case isn’t really bothered by them at all.  The only problem we seem to be having is finding shoes wide enough in the heel to fit over them.  Ginger says many parents don’t even  put shoes on their kids at all (obviously in the summertime mostly) and just attach a little rubber tread to the bottom. So, that’s next on the to-do list for us, because as our last days in NC draw near, the temps are rising rapidly and his little feet are getting very sweaty!

As for progress in the walking arena, he’s making some slow progress.  Like I said, he’s getting better at pulling up and does do some slow ‘cruising’, but it seems he’s no where near walking on his own just yet.  Right now we’re working on getting him to bend his legs and develop his quad muscles as he tends to tense his entire leg while stepping and standing and looks a little like a zombie when using his push-toy walker.  We do lots of exercises using the parallel bars Brian made him, getting him to bend down and pick up toys, etc.  Hopefully, all our work will pay off with some more balance and knee-bending soon!

For more information on SureStep, visit their site and check out the video – it’s pretty motivational!

http://www.surestep.net/

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Case Study

Case during his ECG

Spreading the word on facebook and the blog leaves much to be desired, and yet here goes:

Yesterday we met with Dr. Sharon Cooper (http://bit.ly/aYEQAe), a Pediatric Development Specialist about Case’s delay in meeting his motor skill milestones.  As many of you know, Case was referred at his 4 month well-baby checkup to Early Intervention for his poor head control, developmental delay, and overall hypotonia (low muscle tone).  We have been meeting on a bi-weekly basis with the Early Intervention Program Manager, Kim Moser, part of the Pediatric Evaluation and Treatment Team at Womack (PETT) and have also been seeing a Physical Therapist (Michele Hurley of Move With Me Physical Therapy) on a weekly basis since late July. As many of you also know, we began our own versions of physical therapy with Case around 3 months when we (mostly me, the worry wart) initially thought something was up.

We had heard great things about Dr. Cooper prior to our appointment and were not disappointed.  Our appointment consisted of an in-depth q&a starting from my pregnancy until now where she typed up everything we said  (no pre-made forms here) and then took a long look at Case.  We, of course, came well-prepared with a typed list of concerns and questions that we shared with her just prior to the appointment.  She took the time to go through each of our questions, line by line.  The result?  She ordered an intense workup of diagnostic tests to eliminate any of the major concerns (neurological/metabolic disorders mostly).  After the appointment, Case and I headed down to Cardiology where Case received an ECG, then to the lab to draw blood for a comprehensive metabolic panel, high resolution chromosome analysis (one form of cytogenetic testing – that will take a month) and a basic CBC and Differential (complete blood count and white blood cell count).  She also ordered referrals to Audiology for a hearing test (hasn’t had one since birth) , Ophthalmology for a vision test (to assure that his optic discs are normal because of a little bit of delay in his visual tracking) and an MRI.  Finally, she got us an appointment at the Dermatology clinic at UNC Chapel Hill to get his eczema under control.

And now we wait…

In the meantime, I’m scheduling his MRI (for which he will need to be sedated – poor buddy), his hearing and vision tests, and the derm appointment and cracking the whip at home with round-the-clock PT (slave-driver is Brian’s new pet name for me…sweet, huh?).  We are grateful for all the prayers and warm wishes.  We definitely have a journey ahead of us.  Fortunately, we have a lot of motivation (duh!) and a ton of support.

Updates as we know more…

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